Skip to main content

ETHNOS_APP

Home • Search • Journals • List 0

Control, trust and the sharing of health information

The limits of trust

Bibliographic Data

ID21515147
AuthorsSøren Holm (0000-0003-1411-1855, University of Manchester, corresponding author), Thomas Birk Kristiansen (0000-0002-8783-3595, General Practice, Ishøj, Denmark), Thomas Ploug (0000-0002-3693-0547, Centre for Applied Ethics and Philosophy of Science, Aalborg University Copenhagen, København S, Denmark)
Year2021
Volume47
Issue12
Pagese35-e35
Publication date2021-12-01
Open AccessNo
TypeARTICLE
VenueJournal of Medical Ethics (JOURNAL)
Journal identifiersISSN: 0306-6800 • E-ISSN: 1473-4257
PublisherBMJ (PUBLISHER • GB)
DOI10.1136/medethics-2019-105887
PMID32843438
OpenAlexW3080569006
LanguageEN
Citations received2
References cited25

Clinical information about patients is increasingly being stored in electronic form and has therefore become more easily shareable. Data are collected as part of clinical care but have multiple other potential uses in relation to health system planning, audit and research. The use of clinical information for these secondary uses is controversial, and the ability to safeguard personal and sensitive data under current practices is contested. In this study, we investigate the attitudes of a representative sample of the Danish population towards transfer of clinical data from their general practice for secondary use. We specifically study: (1) patients’ trust in different types of healthcare professionals, (2) their interest in being asked about secondary use of data and (3) their willingness to dispense from a requirement of informed consent based on their trust in healthcare professionals. We find that adult Danes are positive towards research that use patient data, and they generally trust general practitioners, hospitals and researchers to treat their data confidentially. Nevertheless, they feel that they have a right to control the use of their data, only 7.3% disagreeing, and that the data belong to them, only 14.0% disagreeing. Answers to further questions about the relation between trust, information and consent show that although trust modifies the wish for information and consent, there is still a strong view that the patient should control the use of data. We find no differences between those who have frequent contact with the healthcare system and those who do not

Alternative medicine · Audit · Business · Danish · Data mining · Health care · Informed consent · Internet privacy · Knowledge management · Medical education · Political science · Public relations · Computer Science · Ethics in Clinical Research · Medicine · Patient Dignity and Privacy · Patient-Provider Communication in Healthcare · Psychology

  • The Unique and the Universal

    Open Access•Francisca Nordfalk, Maria Olejaz et al.•Engaging Science Technology and…•2022

  • Measuring the willingness to share personal health information

    Open Access•Marcello Benevento, Gabriele Mandarelli et al.•Frontiers in Public Health•2023

  • Participation Rates in Epidemiologic Studies

    Open Access•Sandro Galea, Melissa Tracy•Annals of Epidemiology•2007

  • The ‘Expiry Problem’ of broad consent for biobank research - And why a meta consent model solves it

    Thomas Ploug, Søren Holm•Journal of Medical Ethics•2020

Citations per year0.5
Citation span2022 - 2023 (2)
Highly citedNo

Tools

Open DOIOpen Access
Ethnos_APP • Open Source Project • MIT License • Frontend v2.0.0 • Privacy and Cookies • API Documentation: api.ethnos.app/docs • API Source Code: GitHub • DOI: 10.5281/zenodo.17049435 • Frontend Source Code: GitHub • DOI: 10.5281/zenodo.17050053 • cruz.rio.br • Expectantes Misericordiae